Welcome to the 2018 series of the Louden on Autism Q & A. As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a a question about when the “right time” to speak with a child about autism is, if you have a child or grandchild who is on the spectrum. Read more below.

QUESTION

I noticed that as my grandchild gets older, her differences stand out more. She is starting to question the differences and I’m wondering at what time is it appropriate for me to talk to her about “labeling” and having autism NOT define her as a person in this world we live in today.

ANSWER

This is a difficult question, because it very much depends on how you think the child would handle it. Generally speaking, I feel that when someone starts recognizing that they’re having struggles other people don’t, and that they’re having more difficulty with things than those around them, it’s time to start talking. I don’t advise that you wait until she notices huge differences and has no clue why. It’s better, in my opinion to get out front of any issues, rather than to act in a reactive way.

Certainly, the possibility of problems occurring is more likely when someone is not told about their disability and given the support they need. Consider the stories told by many individuals with an autism spectrum diagnosis who were not told, and/or not diagnosed until they were adults. Not understanding others or social situations for many leads to poor interactions with others and results in ridicule and isolation.

When you recognize you’re different, thinking “everyone’s better at life than me” can lead to pretty significant self-esteem and depression issues. You don’t have to throw her in to the deep end with the whole autism diagnosis necessarily, but being able to offer constructive and affirming answers to the questions that will come up, rather than leaving her to stumble around in the dark, can definitely help her manage the struggles that she may face.

As I usually say, each situation is extremely different, so I encourage you to do what you think is best for the people around you, but take it slow and be considerate of feelings and individual mindsets along the way.

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about communication in the early years. This is a very common question, so I thought I’d share my feelings in a post.

QUESTION

Was It hard to communicate at 2 years of age? My two year old seems to be sensory seeking and can talk, knows a lot of information. But he is very sensitive and struggles to use words. How does he feel in his mind? I just want to understand him better. I think he’s going to be a genius. Truly. I just want to foster what he’s capable of doing. Please advise!

ANSWER

Communication can be challenging at all ages with autism. I was particularly verbal and a young age, but that’s not the same as being communicative. Communication is more than just “saying words” and often those of us on the spectrum don’t communicate easily with those around us.

I would advise you to try to foster what skills he has already developed. Work to focus on encouraging general communication in ways he’s comfortable with, and worry about specific types (verbal, emotional) as it comes and goes. Focusing on types of communication that they might find uncomfortable or hard, or before growing a strong desire for communication, can encourage withdrawal. Why work on learning to do something you find uncomfortable and don’t find value in? Foster the value first, and the desire for skills can grow from that.

I always try to encourage people to play the long game. Don’t force someone to do something that “you” think is better for them this minute, because you “think” it might be the best way to handle a situation. But, instead, think about development over time and what is best for a person, a family, and the general life overall in the long term picture.

Overall, my best advice is to remember that for children with Autism Spectrum Disorder, communication development happens differently and more slowly. Because of the sensory challenges associated with the disorder, children with autism might seem more interested in environmental sounds, like the whirring of a fan or vacuum than in the sound of people talking. They may seem distracted or even seem not to hear what people say. But in the end, let the child learn to develop on their own time and at their own pace. I surely think it will help them improve in all areas.

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question from a mother of a child who is autistic and non-verbal. She was wondering whether or not sign language is a good alternative, since she is losing hope about verbal possibilities.

QUESTION

I found your book very informative, especially since I have a 5 year old song who is non-verbal. I’m worried that he isn’t showing any signs of speaking, and even though he is young, I have a feeling this might be a long-term issue. Do you have any advice on whether or not sign language is a good alternative?

ANSWER

I’ve heard many parents tell stories of their non-verbal children progressing to language eventually, under differing circumstances. I think it’s important to give it time and understand that each child or person learns at their own speed when it come to becoming verbal.

Sometimes it’s through work with a BCBA or OT, other times it’s just as they grow up and become more comfortable with life itself. It could always be a trust and comfort issue. There are also others who find speech to be overwhelming, but use alternatives, as you referenced in your question.

Among them is sign language, as you mentioned. There are also tools and apps that allow someone to press pictures or words, and have them spoken. This could be a great learning tool for your son. Alternatively, some people just go with writing. It’s such a classic way of communicating, that I think we often forget how easily it can be used.

There’s a wide range of possibilities, but at the age of five there’s still the very real possibility that it’s a delay and that language may be developing slowly but may still develop. This is all anecdotal of course, people I’ve met or stories I’ve heard. You’d really need to consult with someone like a speech therapist to dive into investigating what kind of delays he’s experiencing and whether it warrants certain actions to attempt to address it. But don’t give up hope! He is so young and impressionable that speech might one day come very easily.

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question from grandparents of a child who is autistic. They were wondering how they can come across as loving, but still remain firm and provide discipline for their grandchild.

QUESTION

How do grandparents handle and come across as loving yet firm in handling verbal discipline? Our grandchild just goes home and berates us to Mom and Dad and then over and over again we are in the doghouse. What’s a grandparent to do?

ANSWER

This is a really hard question to provide good help with. For one thing, I’ve seen many times where a parent or grandparent is absolutely positive that a child is acting intentionally defiant, and knows what he’s doing, when the reality is he doesn’t. Of course, I’ve seen other times where he does.

What this usually indicates is a general breakdown of trust. Whether or not the child is being intentional, they’ll recognize that you don’t trust them anymore, and it makes it much, much harder to get to the bottom of where the real problem is, whatever it may be.

Unfortunately, with autism, simple discipline often just isn’t effective. In a world that’s scary and challenging, it can be really hard to distinguish between “deserved discipline” and “undeserved distress.” So discipline ends up not having the desire expected, and instead just makes the trust gap worsen.

The reality is that it’s sometimes important just to accept that things have gotten off the right track, and that you may have to let go of traditional ideas about how to straighten out a problematic child. What you may be looking for now are ways to rebuild the trust, so that you can have a conversation *with* the child about acceptable behavior, rather than trying to enforce it with someone who isn’t really able to internalize guidance in that form.

Just always try to remember that not every situation is the same. So even though I can provide advice about my experiences and the experiences that I’ve heard of and studied, each scenario and life situation will be vastly different. Give it time and see what works best for you!

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about a child with autism who is having difficulties becoming more verbal and if therapy might be the best option.

QUESTION

What can I do? Where do I go for help? My daughter has had early intervention and ABA therapy. The ABA therapy didn’t seem to help her very much as she did not show much improvement. What therapy can you recommend? Thank you so much for trying to help us understand people with Autism.

ANSWER

ABA can be valuable for developing the technical ability to do specific things, but can run into challenges when attempting to address the more subtle challenges of autism and motivation. One problem with autism is that through life you learn to lose confidence in yourself.

ABA can even reinforce this. You’re taught that you don’t know how to do things and need others to explain them to you. Even when you have the skills, you don’t have the confidence to do it yourself, and you’re afraid of the results of failing. It can result in a very reactive life, only doing things in response to specific other things. Even when told to do it, the internal anxiety can overwhelm you and make it hard to start or do the things.

You may want to look into therapies with a developmental focus – ones focused more on a slow approach to internal growth rather than skills focus. I hesitate to recommend individual therapies as I don’t have the time to investigate all of the ones out there in-depth, and I’m not a doctor and can only gauge them loosely. It’s important to work on natural confidence growth. When you succeed at something because someone else told you to do it, and you doubted your ability to do it, that can result in confidence growth, but it can also result in confidence loss: “I can’t even judge whether or not I can do it, I have to depend on someone else for that.”

Look for opportunities to create situations where she can choose to act, and succeed. Start in areas she’s interested in, don’t worry too much about the behaviors you want to encourage yet. Just getting her to do things on her own volition, and either succeed or learn from the failures (and in particular, learn that failures are okay) can help with the sort of growth it sounds like you want, I think.

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about a child with autism who is having difficulties communicating signs of pain to his parents and grandparents.

QUESTION

I’m having a very difficult time understanding when my son is hurting, hungry or showing other signs of pain. Any advice?

ANSWER

Unfortunately, there’s not a lot you can do before he’s developed a path of communication. Just like any person, if they don’t tell you something, you can’t really know it other than just looking for clues or signs.

Those of us on the spectrum can have communication delays, but sometimes it’s also an issue of communication methods. For various reasons, sometimes people with autism work better with communication methods other than words. They may be unable to say what they need, but may be able to write, or point to pictures, or use other means. It may be worth experimenting with other ways to see if he can show you something or do something when he’s hungry.

I think that it would be beneficial if you work to understand what methods of communication might work best in certain situations, as these can change often. Dependent on how your child is feeling, one day they might want to communicate in a different way than before.

The best advice I can give is that being open-minded about communication methods is very, very important. Not all people on the spectrum will communicate problems of pain or hunger the same way — especially if they’re non-verbal in most cases. But working to make things easier on them, rather than getting frustrated, is a great place to start.

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about a child with autism who is having difficulties talking with females and his parents are worried about his dating life.

QUESTION

My son has a rough time talking with girls. He will tell them how much he likes them. He will try to interact with girls in the ways he sees on TV and in movies, but his quest to find a girlfriend has caused issues at school. I don’t think he is trying to upset people, but he just doesn’t understand relationships in general. Any advice?

ANSWER

This is a very difficult topic even for neurotypical kids – dating is something you have to try and fail at repeatedly before you sort of get the hang of things. Some things are just going to come slower for those of us on the spectrum. That being said, I do feel it might be best for all directions on the topic to come from one source. Contradictory directions can be very confusing. As well, if one person knows how to communicate ideas to him better, that can be important, because with the habit of taking things more literally or more absolute, good advice can sometimes backfire.

My biggest recommendation would really just be focusing on the question “why?” As you said, you think he just wants friends, and just wants a girlfriend. Focus on exploring those ideas. Not just stopping at “because that’s what other people are doing” but into “why do you think they’re doing it?” And the idea that such things are a two-way street, it’s like the idea of sharing. You’re sharing something, the relationship, and when you’re sharing you don’t tell someone “I want this” but rather “would you like to share this with me?” And if someone says no, you accept that.

But really, focus on “what does he hope to get in a relationship.” So often it’s the answer you said above, “because others are doing it” or a similar “because you’re supposed to” and without a foundation of a realistic reason for being in relationships, it’s hard to build a good set of ideas about how to go about starting and maintaining one. It will come with time, but learning experiences are all part of the process for all humans, especially those of us on the spectrum.

Welcome to the 2018 series of the Louden on Autism Q & A . As many of you know, I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about a child with autism who is becoming more and more defiant and difficult to deal with on a day-to-day basis.

QUESTION

My 24-year-old daughter on the spectrum has suddenly refused to do some things that were givens for years that she was so good about doing. She used to be very nice about doing chores and the day-t0-day life responsibilities. But recently, that has changed. Any advice?

ANSWER

It’s hard to say, exactly. Changes in behavior can come from a lot of things. Often behavior like that, which may be seen as a “regression” suggests that there’s some new challenge in her life, something that’s taking mental energy, and leaving less for being able to do things that may have seemed “easy” for her before.

This can be something like physical distress, such as illness or pain from co-morbid conditions, or it can be emotional distress, such as reaching those mental “teenage years” where she’s wanting something else out of life, but doesn’t know how to express it or relieve some of that stress. She’s most likely doing it as the only way she knows to help preserve her mental health, but it may be hard to observe and see if you can figure out whether something has changed externally or internally, or if it’s just a change in personality as she grows.

A lot of the challenges we face in raising children with autism is that situations are all so different for each person on the spectrum and as we all get older, things impact our lives differently. Some situations that typically did not bother a child, might bother them in the future, or in the present. Overall, it’s important to know that she is likely working hard to preserve a feeing of safety and she’s just growing as a person. As we grow, we all change — we need to allow people with autism that opportunity as well and not jump to any conclusions about defiance.

Welcome to the Louden on Autism Q & A. This week, I’m back to answer a question submitted by a website visitors to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about autism and the younger years. These can be very difficult for many parents, so let me know if you ever have any questions. Here it is…

QUESTION

My son is 10 and was finally diagnosed at age 6 with ASD. We have overcome many obstacles and have many left. My son is fortunately high functioning and quite intelligent. It has been quite the learning experience. For the last 5 years, I’ve had to fight the biggest battle that I never realized I would have: Education. The community of school is so unknowledgeable of how to reach ASD children as well as manage behaviors that it can be detrimental. I have learned so much that I have become a strong advocate and am happy to say have finally forced the school district (took me 5 years) to make some small changes that will help not only my son but others.

You are on the spectrum so what difficulties can be expected during his adolescent years? How can I help my son accept his diagnosis, be proud of who he is and reach his fullest potential? How can I advocate more and help him do the same?

ANSWER

One of the biggest challenges I faced during adolescent years was a desire to have more friendships and date, without really understanding what that was or why I wanted it. A lot of popular culture shows high school as being a certain way – close friends, dating, etc. One thing to work on is making sure there’s an open communication channel. Help him discover what he really wants, and reason through why he wants it, and what he hopes to gain from it. I felt there was a way I was “supposed” to be, and it led to me trying to hard for things I didn’t really want.

After that, it was also the increased independence in later high school and early college. I wasn’t really prepared for the significant shift from “clear daily schedule” to “manage my own time” and it led to some poor outcomes. My best advice is just to do your best to forge whatever bond you can so that he feels he has someone to share his emotional state with – what he wants, why he wants it, and what he’s struggling with.

As for being a better advocate? I don’t really know. To be honest, I’m completely flying by the seat of my pants here. I think in some ways it may be harder to be a parent advocate. I’ve found that revealing some of my worst moments have been very helpful in framing for people the idea that although I speak well, I’ve had some significant struggles still, and help them understand where I’m coming from when I talk about my experiences.

Unfortunately, as a parent, it’s not really ideal to be hanging your son’s metaphorical dirty laundry out for others to see. It’s a balance of preserving his trust in sharing things with you, to help him get the help he needs. Honestly, I’m really hoping to make more materials available that may help in an educational context that might be useful for parents to share with educators, but that’s just one of those “I hope to do” plans right now.

I would say be clear and don’t take “no” for an answer if you know it’s something he really needs. The ADA requires reasonable accommodations, and it also lets the people asking for the accommodations define what they need, *not* the person giving them. The person giving them only argues whether or not they can offer that accommodation at reasonable expense and inconvenience for those involved. Your son has a right to the same educational opportunities as everyone else, don’t let the schools forget that.

Welcome to the Louden on Autism Q & A. This week, I’m back to answer a question submitted by a website visitors to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about autism and the future of diagnoses. Here it is…

QUESTION

If 1 in 68 children (1 in 50 males) are being diagnosed with autism what will the world’s population look like in 20 years? I am a 78-year-old and have has been in special education advocacy field for 35 years. I also adopted and raised my 17-year-old great grandson who has autism. What a learning curve it has been. Even though I thought I was well versed in disability understanding and advocacy, autism was a whole new set of rules and language. I daily watch the struggles my grandson undergoes to try and understand my world. What will life be like for all of us in 20 years?

ANSWER

For the most part, I believe the higher diagnosis rate is more anchored in our improving ability to recognize autism early, and in higher functioning forms. I wouldn’t be surprised if we found that better diagnosis and treatment meant that we have fewer people struggling, unemployed, or in jobs that make their mental health worse and their life experience worse.

In many cases I’ve observed older individuals, people from before we really started pushing to diagnose autism, that I’m fairly certain are exhibiting signs of being an individual with high functioning autism. There’s even one past supreme court justice, in reading both his opinions for the court and his personal thoughts on his life and experiences made me suspect he may be an undiagnosed individual with autism.

In some ways the high numbers are a crisis, but I feel it’s a crisis of “now we know how serious it is” rather than “it’s becoming worse and worse” and that it largely means that individuals who would slip through the cracks will now have the chance to address some of their challenges better, and live healthier, happier lives.